This is a very healthy meal that you can make fast and cook the ribs while you are busy throughout the day. The cauliflower and green beans can be made about an hour before you are ready to eat/serve. The cauliflower takes the place of mashed potatoes and is healthier for you as it eliminates the starches that you would have with the potatoes.

Ingredients:

1 pack of Country Style Pork Ribs

1 head of Cauliflower

! package of frozen Green Beans

4 tablespoons of Kerrygold Irish butter with spices

Greek seasoning, salt, garlic powder

Directions:

Place Country Style Pork Ribs in slow cooker, on low for 6-9 hours. Season with Greek seasoning.

An hour before you are ready to eat – wash and cut up cauliflower.

Steam cauliflower until soft. Place the cauliflower in large mixing bowel or blender and mix/blend until a smooth consistency adding Kerrygold butter, salt and garlic powder to taste. You may also add Almond Milk or regular milk (which ever you prefer) to make it a little creamier.

Chronic Pain: Introduction to building a Team of Doctors for PM and its Symptoms

Chronic pain is one of the most difficult medical diagnosis to treat because it comes with a list of its own side effects. So many times pain management doctors just want to treat the pain only without recognizing the side effects, such as depression, that exacerbate the pain. If the doctor does not look at the total overall effect chronic pain has on the individual, more than likely the patient will not receive the best medical care to treat CP and the side effects. Patients need to be honest with their PM doctors about their CP and all the symptoms they are having, regardless if you believe it is related or not to your CP diagnosis. Other symptoms you need to speak with your doctor about include sleeping problems, how you feel during flares and lower pain days, any mood problems, and (but not limited to) how you socialize with others.

There are so many ways to control your chronic pain, including medications, meditation, acupuncture, chiropractic treatments, biofeedback, psychology, psychiatry, IV therapy, and even surgical intervention. Pain Management doctors need to look at the whole patient and discuss every avenue of treatments available for and tailored to the patient.

Medications have come more advanced, more effective, and there are many different options available then there were even 30 years ago. The majority of pain management doctors are anesthesiologist who specialized in pain management. Their knowledge of pharmacology is vast, however every doctor has their particular go to medications that they like to use. Sometimes this is an advantage to the patient, because the doctor has seen many patients respond positively to the medication. However this can also be a huge disadvantage because every patient is different in many ways, including their pain diagnosis and location, medical history, family history, and how their pain effects them physically, psychologically, socially, and emotionally.

Working with a team of doctors that communicate by sharing information and treatment options can benefit the patient and their overall health. Many times medications such as those classified for neuropathic pain possibly can be more effective if combined with an antidepressant. This where a team of doctors can benefit the patient by having those doctors who’s pharmacology information is greater in a certain classification can work with the other team doctors to determine what combination will work best for the patient. Not only will this help treat the pain, it also can help to treat the side effects of chronic pain, such as depression and insomnia. Many side effects can increase pain if not treated correctly. So adding an antidepressant/antianxiety/sleep medications can help the patient relax, get relief, and a restful night’s sleep. This in return benefits the patient, their body, and overall health.

When interviewing a pain management doctor (or any doctor), remember a couple of things:

What is their educational background? EX: Where did they go to medical school? Where did they do their fellowship? What is their specialty?

What is their professional background? EX: What clinics/hospitals have they worked for? Do they have any complaints against them?

How do they interact with you? EX: Do they listen well? Do they have a good rapport? Do you feel comfortable with them?

Are they willing to work with other doctors? EX: Your GP, psychologist, psychiatrist, surgeon?

Do they look at your overall health? EX: Your medical and family history? Other symptoms such as insomnia or depression?

Are they too quick to write you a prescription? EX: “All my patients take (insert medication here) and it really works for them.” And hands you that script.

Are they willing to research alternative treatments if conventional ones do not work? EX: If nerve blocks stop working, would they look into IV therapies, ketamine treatments, or even clinical trials?

If they can’t help you in the future, will they write you a referral to someone whom can? EX: If everything that they have tried doesn’t work, will they help you search for someone that may be able to help? Or, are they willing to add another doctor (possibly in a different specialty) to the team by referring you to see them?

Remember, you control your appointments. You should be able to ask questions, voice concerns and be honest about your pain and side effects. Also, you chose to hire your doctors, if they do not have your best interest in mind, you can fire them! You want to choose a doctor that will work with you and a team of doctors to provide the best treatment plan for your chronic pain and the side effects!

As your children gets older, sometimes it is hard to find a doctor that is qualified, knowledgeable, and highly skilled in the area of Spina Bifida. This also happens throughout their life from infancy/toddler stage through adulthood. Sometimes, you may need to travel to a SB clinic, a children’s hospital that specializes in SB, or other specialist that deal with specific conditions related to SB – such as neurology, neurosurgery, urology, orthopedic, nephrology, gastroenterology, physical therapy (occupational, orthopedic, neurological, and, rehabilitation, pediatric), neuropsychology, psychology, ophthalmology, optometry, possible pain management, speech pathology and a pediatrician – just to name a few. Your child deserves the best care possible for their SB and you may need a team of doctors who are willing to share information and develop a care plan tailored to your child and their needs according to their level of SB. I have some advice on how to navigate through the medical community while being organized and prepared for whatever situation you may encounter.

1. Maintain your child’s medical history. Get copies of every major appointment, diagnosis, testing (including radiology reports, blood work, and any work up done by a specialist), surgical history, medications, allergies, and all diagnosis. Maintain an organized binder by classification with all these copies of medical records. Take this to every appointment, making sure you have extra notebook paper or spiral notebook in the binder, so you can take notes at all appointments. (Also see my post “Traveling with Medical Conditions” and “Simple Medical Worksheet” because they both address how my simple work sheet is written.)

2. For MRI’s, CT scans, and any diagnostic imaging, make sure you not only have a CD with the images on it (easy to take to appointments) and the radiology report (file in your binder) but also retain the films, especially when it comes to MRI’s. Have a place in your home to store them, ex: on the top shelf of a bedroom/linen closet. This way if neurology or neurosurgery wants to compare the images to the prior ones, they can do so. Most neurosurgeons are okay with just having the CD copy, however some of the old school doctors love seeing the actual films themselves. The reason being is they might spot something that the radiologist missed in their report. Also this is a great way to show you, as a parent, and your child (when they are old enough to understand) the difference in the imaging from the prior one.

3. Before each appointment, in the binder, write down any questions, concerns, comments, changes or medical testing and surgeries, which have happened since your last appointment with that particular doctor. This is the best way to prepare for the appointment and to remember everything that you needed to say or needed more clarification on a certain test, diagnosis, or even a recommendation they had made that you might not have understood completely. I prefer to have a section for each doctor and/or field of study.

4. While at each appointment, take notes so that you remember what the doctor had said and recommended at that appointment. Sometimes we get so overwhelmed with all the information during an appointment, that we are lucky to remember half of what they said/recommended. Speak up if you have a question or concern and ask them to clarify it for you. Sometimes the medical community loves to use all the medical jargon and don’t realize that most people might not understand what they are saying completely.

5. It is always good to get a second opinion, especially when it comes to surgical interventions. There is no repercussions on you or your child by getting a second opinion or even a third. Your intentions are to find the right doctor or procedure that you feel would be best for your child and their quality of life.

6. You also have the right to fire a doctor that you feel is not the best option for you, your child and their treatment. If you feel that they don’t have enough experience, they don’t communicate well with you or your child, or you question their recommendations, you can fire them. You and your child need a doctor who is willing to work with you, your child, and other doctors on your team, to find the best treatment available.

7. You do have the right to file a complaint against the doctor if you feel one is needed, especially if they have been unprofessional or unethical. You can file the complaint with the clinic or hospital they are affiliated with or you may speak to another doctor (that you are comfortable with) and they can explain the channels of filing the complaint. If you feel that the appropriate action was not taken in remedying the situation, you can also get in touch with the state medical society or licensing board. I have been in this situation. When I went through the clinic’s procedure of filing a complaint, the minute I said that I would go to the state board, they were immediately willing to help me. I do not know the outcome of the complaint I filed, however I did let them know that if I find out that another person complains about this particular doctor, I would then take it to the state board. You should not have to deal with unprofessional and unethical doctors.

8. Go with your gut feeling. This is like your warning light going off. If you feel something is just not right with a treatment, a doctor, or with your child; go with it and find the best way to handle the situation. Again, you have the right to fire a doctor so you can obtain the best care for your child. This also applies to emergency doctor appointments or trips to the ER. If you feel that your child is having abnormal symptoms or behavior, call the doctor or go to the ER. Parents know their children the best, so it is always safer to seek medical attention when you feel something just isn’t right!!! It is always better to be proactive than to let the symptoms escalate. This way you can get a solution/intervention as soon as possible!

9. Remember, you are your child’s best advocate. Fight hard for the best treatments out there for your child throughout their life. Stay on top of doctor’s appointments, medical testing, diagnosis, and treatments. If your child is in the hospital as an inpatient, you can always call and request a patient advocate to help you. Use any and all resources you can for the best interest of your child. Also, there might be help available in your state for a medical advocate.

****All that is bolded and underlined below, should be on your worksheet (bolded & underlined), so they are able to view and distinguish between the different fields. I would also single space it so you can fit more onto one page****

MEDICAL HISTORY

Name of Patient

Date of Birth

Insurance information

Parent’s Name

Parent’s Contact Information

ALLERGIES (this needs to be in red bolded font and highlighted)

DIAGNOSIS (list these individually, on separate lines)

Spina Bifida

Hydrocephalus

Neurogenic Bladder (must catheterize)

MEDICATIONS (list the name, dosage amount, and dosage schedule – you also can google how to abbreviate dosage schedule EX: prn, bid, tid)

DOCTORS (the one’s you see on a regular schedule, what specialty, list their name, address, and telephone, you can do this in two columns and use abbreviation for their specialty)

Dr. Joe Smith – General Practitioner/Primary Care Physician (GP/PCP)

1234 Medical Park

City, State, Zip

(555) 555-5555

Dr. John Doe – Neurologist

4567 Medical Plaza Dr

City, State, Zip

(555) 555-5555

*********** You should make this as a Word document and save it, so you can update information. It is a good idea to make multiple copies. Keep one in your purse, in your car, in your child’s backpack, file one with the school, at home where you store emergency numbers and information, leave a copy out for the babysitter in case of an emergency, file a copy in the medical binder, take them to all doctor’s appointments (either give them the sheet or have them make a copy), and bring them to the ER or Urgent Care facilities if your child needs to see a doctor quickly. This helps you know all the information many doctor’s offices and ER’s need to know to help determine the best care for your child. Keeping it up to date will also help you keep track of everything.*************************

Being a new parent is hard enough, let alone learning that your perfect baby has Spina Bifida. (*Note, I believe every baby is perfect in their own way!) Whether you find out during your pregnancy or when you deliver, the information the medical community provides you with is very over-whelming. Most people have never really heard of SB, let alone thinking it could possibly happen to their child. Then they start giving you a bunch of statistics and advice on what to do and how to treat the child. This could entail, but is not limited to, multiple surgeries – sometimes even before you get to take your beautiful baby home. They may also place your baby in the NICU for either a predetermined amount of time or until they think the little one is safe to go home. So many things happen after the delivery that starts to put some parents into panic or survival mode. Being inundated with so much information and surgical intervention can cause a lot of stress, anxiety, and even depression for new parents.

I believe that the medical community does not inform parents correctly and overwhelms them too much that they are at a loss of what to do next. All you want is to hold your baby in your arms and be able to bring them home so you can start adjusting to having your baby. I also believe that some of the information the medical community provides you is incorrect or misleading, which then could lead to being pressured into doing something that might not be necessary. This may come directly after delivery or later down the road as your child grows.

What can we, as adults with SB, do to help new parents with the diagnosis and educate them about SB and what might happen in the future, depending on the level and degree of SB the child possesses?? I have compiled some advice I would give to new parents with a child diagnosed with SB. (This is my first part of the series!)

1. First and most important is to stay calm. As hard as it sounds, staying calm will help you retain information and not cloud your judgment on what may be best for your child throughout the years.

2. Understand that doctors do not know everything about SB. They have an idea, especially when it comes to pediatric cases, but not a full understanding about the future and what it may hold for your child.

3. This diagnosis is not your fault as a parent. Most likely you did not know you were pregnant until well after the first 28-30 days of your pregnancy and in that time frame is when SB develops.

4. Folic acid. (This part irritates me!) While there may be great studies out there that state SB is caused by lack of folic acid during your pregnancy, that is not the reason in most cases of SB. They have barely scratched the surface in explaining why SB happens and treatments needed throughout the patients lifetime!

5. Research SB. Not only through medical journals, because they use so much medical jargon you might not understand, but through other means. Getting together with the SBA and find a chapter close to you so you can interact with other parents and individuals with SB. Also, social media is a great tool but can also lead to disappointment due to people who refuse to be positive and encouraging to others whom have SB and their families.

6. Remember, SB is also referred to as the “Snowflake” birth defect. Just as two snowflakes are not the same, there are also never two SB cases the same either. Even though the lesion might be at the same level, other factors are involved and the treatments will be different because of those other factors.

7. Do not accept everything the doctors say about the abilities or non-abilities your child may or may not posses in the future. Always remain optimistic!!! This will get you further in life, but also while going through your child’s treatments. Being optimistic during the roughest times, will also help your child’s state of mind as they grow up and start to fully understand SB. They will absorb your optimism and apply that throughout their lifetime.

8. When you get overwhelmed, frustrated, angry, stressed, etc. have an outlet to get rid of those feelings, but not in front of your child. Go to the gym, take a walk, use a punching bag that is set up somewhere out of the way, or even speak with a therapist. Find some way to relieve what ever you may be feeling in a productive way!